Donegal County Council is being asked to support a call for access to a life changing drug to treat a rare condition known as the ‘Donegal disease.’
Amyloidosis is caused by deposits of abnormal protein – amyloid – in tissues and organs throughout the body.
One variant of ATTR amyloidosis, known as ATTR T60A (or Thr60AIa), was first identified in an Irish family in 1986. A cluster of cases have since been identified in County Donegal, where up to 1 per cent of the population are estimated to possess the mutation. The North’s former Deputy First Minister, Martin McGuinness, died from the condition in May 2017. Mr McGuinness’ late mother was from Donegal and he spent much of his time in Buncrana.
At today’s meeting of the council, Cllr Terry Crossan is proposing that local authority writes to the Minister of Health, Stephen Donnelly, Chief Clinical Officer, Colm Henry and HSE Director General Paul Reid, calling on them, as a matter of urgency, to make Patisiran available to everyone in the 26 Counties who require this life- changing drug.
“Furthermore, I ask Donegal County Council to circulate this motion to all other County Councils in the 26 Counties to ask them for their support in this matter,” Cllr Crossan added.